Rare Bone Disease

The Jenny Lind Children’s Hospital at NNUH has a specialist team of healthcare professionals to look after children who have a number of different rare bone conditions.

We have regular dedicated clinics for Osteogenesis Imperfecta and also for Skeletal Dysplasias (such as achondroplasia) in which a team of different healthcare professionals and specialists will help look after various aspects of each child’s health and wellbeing. This includes ensuring appropriate aids and assistance are provided for home and school, use of specialist medicines and surgery where needed. Our team, led by Dr Emma Webb, will coordinate all aspects of your child’s care.

The team includes:

  • Dr Emma Webb – Consultant Paediatric Endocrinologist
  • Mr Anish Sanghrajka – Consultant Paediatric Orthopaedic Surgeon
  • Mrs Kate Wilkins – Specialist Paediatric Physiotherapist
  • Mrs Lesley Brown – Paediatric Occupational Therapist
  • Mrs Jennifer Beckingham – Paediatric Occupational Therapist
  • Mr David Wormald – Paediatric Orthopaedic Specialist Nurse
  • Mrs Emma Brady – Paediatric Orthopaedic Specialist Nurse
  • Dr Ruth Armstrong – Visiting Consultant Geneticist, Cambridge
  • Dr Vrinda Saraff – Visiting Consultant Paed Endocrinologist, Birmingham Children’s Hospital
  • Miss Caron Leftley – Clinic Co-ordinator, Secretary

Please direct any questions regarding your child’s care to 01603 286357 and a member of the team will get back to you.

When young people reach 16-18 years of age they are transitioned to the adult bone service, run by Professor Bill Fraser and Professor Jeremy Turner.

Below is a list of websites that we would recommend to find useful information about the most common conditions that we look after.

Osteogenesis Imperfecta

Achondroplasia and restricted growth conditions (skeletal dysplasia)